New here - Depot Lupron and still have thick endometrium?

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Cinkoz
Cinkoz Member Posts: 7
in Uterine/Endometrial Cancer #1

Hi all,

I'm new here and need some help if possible. Here's the story - I am 46 and have struggled with severe endometriosis, PCOS, and infertility. I have been on Depot lupron for 4 years and have lately been having bleeding and discharge. I did a hystosonogram and they found a polyp. Went  to a new Dr to schedule the hystoscopy to remove OT and he became alarmed by my thick lining. I also have an old endometrioma in my ovary that has him concerned. he scheduled an in depth ultrasound and is doing the hystoscopy to take a biopsy and remove the polyp in a week. 

im obviously worried. Thoughts? And be honest, please. I'd rather know what to expect than just be reassured. 

 

Thanks so much!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    edited March 2017 #2
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    Cinkoz, I am glad you found

    Cinkoz, I am glad you found us, it is a great group of women, but none of us our doctors so it would be wrong to speculate.  I would suggest going through the tests and see what is going on.  IF it is cancer, please ask to be referred to a gynecologic oncologist.  Try to take a breath and be careful of things you read on the internet.  

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited March 2017 #3
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    Hi Cinkoz,

    It's such a relief to find someplace to ask questions and at some point there are great stories to be shared as well as opinions.  I agree with NoTime in her advice.  It looks like you are doing all the right things and your new Dr. seems to be heading in the right direction in his assessment and followup for more procedures and testing.  He isn't wasting any time with you getting in next week and that should be a great comfort.  Try and keep yourself busy- do fun things, work on a project, pick up a good book, whatever distracts you.

    We all know it's hard to wait patiently, but that is the best advice we can give you.   It is best to live in the day that you have and deal with what is right before you, than to borrow from the "what if" of tomorrow.  IF it turns out to be something more, again, not to worry but to keep moving forward one step at a time.  If someone doesn't give you information that makes you feel safe and secure in their knowledge, you keep looking until you have found someone you can trust and they will formulate a plan to get it all taken care of.

    When they do give you results, it is always a good idea to have someone there with you to help you listen because often things are coming at you quickly and it's hard to take it all in.  Have that person take notes so you don't have to do it- record it if you can.  

    All that to say this, we are here for you.  We are interested in what you find out and we'll happily link arms and walk along with you through all the stages.  You will find that you are stronger than you think you are (as you will read in many posts here) and this is a great place to come for support and questions.  (((HUGS)))

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
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    Lupron

    I was on Lupron for 6 months prior to my hysterectomy.  (age 44/45)  My gyne wanted me on it to stop my periods and thereby stop my endometriosis so that it would help lessen my lesions for surgery.   Although I thought I read you shouldn't be on it long, I believe it depends on doses, etc.   But as NoTime indicated, we are not doctors and any questions should be directed to your doctor or get a second opinion from another doctor.

    My best to you,

  • Cinkoz
    Cinkoz Member Posts: 7
    edited March 2017 #5
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    Thanks, all. I guess that

    Thanks, all. I guess that scouring the internet is my coping mechanism! Not much to beyond what I'm doing but just wondered about the Lupron because I'm supposed to be suppressed and my lining should be thin. 

     

  • Rubyshoes
    Rubyshoes Member Posts: 19
    #6
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    Nothing to add but a hug

    I'm in the waiting game too. Sending hugs.

  • janaes
    janaes Member Posts: 799 Member
    #7
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    I struggled with infertility.

    I struggled with infertility.  And had blood clots prior to having a biopsy(age 43).  I too think you are doing the right thing to check things out.  I hope thing go well for you as you go forward.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited March 2017 #8
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    Cinoz

    Hi Cinoz,

    I am sorry you are having such a frightening experience.  I would just like to suggest that you insist on as much testing as your doctor will order.  I am from the Ovarian Cancer board and my symptoms were somewhat similar to yours; bleeding, thickened endometrium, cyst on my ovary.  I also had a history of endometriosis and getting Lupron.  When I had the above symptoms, I had a D&C and everything checked out negative.  I had a follow up ultrasound that looked farily normal, except for a smaller cyst on my ovary.  I kept having pain, however, and the doctor kept telling me it was just scar tissue from a surgery 10 years earlier.  Finally, two months after my D&C, he ordered another follow up ultrasound and it showed tumors in my pelvis.  I would ask for a CA-125 blood test.  This is the marker for ovarian cancer.  It can give a false positive, but it's a start.  You might also ask for a CT scan, so that they can get a better look at everything that is going on.  I wish you luck and hope this is nothing.

  • Cinkoz
    Cinkoz Member Posts: 7
    edited March 2017 #9
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    Tethys41 said:

    Cinoz

    Hi Cinoz,

    I am sorry you are having such a frightening experience.  I would just like to suggest that you insist on as much testing as your doctor will order.  I am from the Ovarian Cancer board and my symptoms were somewhat similar to yours; bleeding, thickened endometrium, cyst on my ovary.  I also had a history of endometriosis and getting Lupron.  When I had the above symptoms, I had a D&C and everything checked out negative.  I had a follow up ultrasound that looked farily normal, except for a smaller cyst on my ovary.  I kept having pain, however, and the doctor kept telling me it was just scar tissue from a surgery 10 years earlier.  Finally, two months after my D&C, he ordered another follow up ultrasound and it showed tumors in my pelvis.  I would ask for a CA-125 blood test.  This is the marker for ovarian cancer.  It can give a false positive, but it's a start.  You might also ask for a CT scan, so that they can get a better look at everything that is going on.  I wish you luck and hope this is nothing.

    Ca125

    Thanks Tethys- I agree. I need to keep going until I find answers. The Ca1 25 test is something that I did years ago and it was elevated, but I was told that that's because of my endometriosis. I was evaluated by an oncologist and he cleared me.  I find it to be such a difficult balance between pushing for more testing and accepting that my pelvic region has some anomalies that I have to live with. It seems that now it's all come to ahead and I cannot continue managing it medically anymore. I think that regardless of the outcome, I will need to have a hysterectomy. This is something that I have avoided for a long time because  I have so much scar tissue from multiple PID's and endometriosis and surgeries. But now it seems like it may be inevitable. I'm hoping it isn't a cancer diagnosis on top of it all. 

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